Sunday, November 20, 2011

(For those looking for an update: Eon's EEG is scheduled for Wednesday morning. We have not witnessed anymore seizure activity. We'll keep you posted.)

Today, I am incredibly grateful to be Simeon's mom. I'm lying on my bed typing on my laptop and Eon is in the tv room right outside mine. He's playing ball with his big brother, Ben. His pants are falling off and his diaper is sagging, giving him a plumber's crack.

Any second, he's going to catch sight of me and run in here signing, "diaper" so I'll change it. While in here, he'll invariable sneak a drink of my coke (and cough...he's still not supposed to have thin liquids) and throw a book at me so I'll read to him.

This morning, he raced into church ahead of me and took off toward the stairs to go to his class. He was indignant when I steered him to the bathroom to wash breakfast off his face, instead. He kept signing, "play, play!" Big sister dropped him off at his class. She later told me that he walked up to the gate and said, "Hiiiiiiii!" and signed, "Play!" to a little boy who was waiting there, then lifted his arms to be carried over the gate and into the classroom. Once inside, he gave a backward wave to big sis and joined in the fun.

I was thinking earlier how empty my life would've been had I chosen differently and terminated my pregnancy for Down syndrome.

Every year, on my due date, there would be tears, sadness, and even guilt. Now, there's cake, candles, presents, and laughter.

If someone with Down syndrome crossed my path, I would inwardly cringe, even as I watched, wondering if they'd confirm my choice by behavior or need. Now, there's an instant delight and immediate connection as we compare notes on our similar trails.

I might feel some measure of relief, along with my pangs of grief, from time to time that my life is not as difficult as I was sure that it would be, but I also would never know what I do now...that courage grows from meeting challenges, that depth comes from embracing hard things, and that love really does conquer all.

He's a miracle, this child of mine. In spite of all odds, he's not only here, he's thriving. He's teaching me what living really means. He's leading me in my quest to discover one thousand gifts, of which he's certainly one.

Without him, my life would have less color. I imagine the winters a little colder and the edges a little harder. The highs of life would be less high and the lows would last longer. There would be less laughter, less passion, less grace...less life.

And I would never know.

What a gift he is to me, this exuberant bundle of designer genes! I am so humbled that God gave me the eyes to see beyond the fear. How I pray that others will see, as well.

Monday, November 14, 2011

Saturday, after having donuts in honor of our bookends' birthdays (Michaela, our oldest, turned 15, and Keturah, our youngest, turned one), Eon suddenly started crying and grabbing his belly while rolling around in obvious pain. We tried everything to calm him and to discover what the problem was, to no avail.

After a half hour of this, we called the doctor on call and left a message for the nurse. Before she returned our call, he calmed somewhat. Then, while he was laying on our bed, his eyes half-way closed, his eyes started flitting from side to side. I called his name and he didn't respond. When I called him louder, his eyes opened wider and stilled, but didn't focus. Then they half closed and flitted some more. The whole thing probably lasted 30 seconds or so. When the nurse called and I explained what happened, she sent us to the ER. Eon was completely exhausted by then and didn't even move when Shawn buckled him into the van. Pulling into the ER parking lot, I thought he looked pale and I couldn't get him to wake up. I shook his leg and patted him and called his name loudly. Nothing. Freaked out, I pulled into the nearest parking spot, yanked him from his car seat and took off running.

Halfway to the door he said, "Momma. Down!" After that, he acted totally normal. He was diagnosed with an ear infection. I tried to hold him down for a CT scan. That was fun. They were able to get enough to rule out hydrocephalus and a brain tumor, anyway.We were instructed to have our pediatrician order an EEG and follow-up with a pediatric neurologist. We have an appointment with our ped tomorrow morning.

Honestly, I'm a little stressed about it all. I was very afraid on the way to the ER. Also, I'm in a lot of physical pain. I hurt my back dashing into the hospital with a 30 pound bundle of low muscle tone. I just recently recovered from a back injury that happened over 3 months ago. I have some thoughts about this new injury that I haven't sorted out, yet. I'll keep you posted.